HFMD Annual Meeting 2022 (by Jim Paist)
It was so exciting to have our community back together in person and face to face on April 8th & 9th at the Intercontinental Hotel at the MSP Airport. Friday night opened with a delicious taco buffet. Families got to reconnect and meet new families who attended their first HFMD event.
Our Board President Kris Rauenhorst hosted a bundle of fun and games with a series of six competitions with an always exciting and action packed Minute to Win It! The intensity and drive to win from our family Teams was thrilling not only for contestants, but for those watching as well.
Members of all ages showed some incredible focus and skill in stacking candy peeps to a memorable plastic Easter egg toss where 8 year old Malik Jr. shot a record 14 eggs into a basket to win 1st place and one of six gift cards.
Saturday morning opened with breakfast and time to visit our exhibitors. After an HFMD welcome, Skye Peltier, PA, and Dex Tuttle, M.ED from Children’s MN shared an interactive and theatrical presentation on helmet safety. With graphic pictures and molds illustrating the human brain, they showed how impact and trauma can adversely affect somebody if they are not wearing a helmet when doing activities where there is a risk to head injury. This was a unique and very well received keynote presentation with a universal topic that applies to everyone, and especially those living with bleeding disorders. After the presentation, each child was fitted was a brand new helmet from Children’s. Thank you to Skye, Dex & Children’s.
Our child-life programming was led once again by Victoria Neis of Children’s Hospitals & Clinics of Minnesota. Vicki and her Team do a terrific job in making it a fun and educational experience for the kids. This year, we also had the pleasure of having child program from Optum, led by PT Angela Forsyth. Thank you to Vicki, Angela, and Optum!
HFMD members love seeing each other in person, and truly enjoy sharing their personal stories with others who can identify with them. So, Roundtable Discussions were next on the agenda where we moved tables together to make 3 large Roundtables with the following topics at each; 1) playing sports with a bleeding disorder, 2) mental health, 3) & pain management. Members shared and learned from each other, as these engaging group discussions are always well received at HFMD events.
After lunch, our group separated into two breakout sessions: Advocacy & Youth Transitioning into adulthood led by Mayo Clinic.
Our Advocacy session featured HFA Public Policy Director, Miriam Goldstein who shared important updates and developments on the federal level. Then from HFMD, Jean O’Connell and I went into to depth on HF 3611 & SF 2136 – state bills to end the Accumulator Adjustor; a highly questionable practice by some health plans where they dismiss 3rd party assistance toward patient/family out-of-pocket costs.
HFMD has been working hard at the Minnesota state capitol with support from a collation of other Patient Advocacy groups to get these bills passed into law in 2022. We then had the pleasure to introduce our former and now current lobbyist, Jennifer Brettinger who shared her experience and wisdom with our members, and what they can do to help get these bills passed. Jennifer stressed how impactful letters, phone calls, and emails to your elected officials can be in determining the outcome of a bill.
The Transitioning into Adulthood session featured Dawn Rusk, RN, and Melinda Otto LSW from our Mayo Clinic HTC in Rochester, MN. They put so much thought and preparation into this program which can be so beneficial not only to the teens and youth, but also to the parents and siblings. We are very grateful to Dawn, Melinda, and Mayo Clinic for sharing this very important program at the HFMD Annual Meeting!
The final program of our event was the much anticipated Ask the Expert Panel, moderated by the multi-talented Skye Peltier. At HFMD, we like to boast about our affiliated clinics and the dedication these providers have in caring for our community. Our panel featured Dr. Mark Reding, Amy Goldstein NP, Melinda Otto LSW, Dawn Rusk, Dana Smith, & Kim Baumann PT.
The HFMD Annual Meeting is a time where our whole community comes together; patient/families, HTC staff, and our sponsor/exhibitors. We’d like to thank everyone for their participation!